I know I have been a little quiet of late but the honest reason is that life is all going quite smoothly at the minute. My stoma and ileostomy bag are behaving and life is getting back to normal… Actually better than how I was before as I no longer have any symptoms of Ulcerative Colitis. No pain, no meds and no constant running to the loo!

Living with a photographer has its benefits, one of which is having him on hand to photograph me when I ask! This shoot was kind of unplanned and was just around the grounds of our studio at The Picture Foundry. Our chickens are limelight whores and decided to jump into a few of the shots.

I think the shoot shows that Im in a good place at the minute, I feel relaxed, happy and kind of proud of my little bag.

Your happiness matters. Everyone, but especially women tend to put other people’s happiness before our own. We make excuses for why we neglect our needs – we are too busy, too skint, too stressed out. If you don’t value your own happiness then no one else will. It is entirely possible to look out for your own needs and still care about your friends and family. If you are happy, you are more likely to spread happiness and care for those around you.

Think about what makes you happy. Now what would make me delirious would be to wake late, eat cake, drink wine and spend the day sunbathing somewhere hot and beautiful. Thats not realistic at this point in my life as I think my kids would have something to say about it! But what does make me happy is blogging, making pretty things, reading, watching a good film, open fires, sauvignon blanc, walking in the woods with the dog and my family, my chickens, a good meal with awesome friends, a lie in with Timm, going dancing with my friends, a full english breakfast… There is a LOT that makes me happy that costs little or nothing and that I make time for. Its easy to neglect your own desires but important that you don’t.

2. Spend time with people who make you happy

Who are the people you enjoy spending time with? Who make you happy, love, respect and appreciate you and who make you be a better person. If you surround yourself with negative people then your life will be filled with negativity, and the opposite is true also, being around positive, happy people make you aspire to be positive and happy.

Sometimes we can’t help who we have to spend time with, we may have work colleagues or family members who are Debbie Downers and we have to hang out with them at times. But in our social lives it is so important to keep awesome positive people around us. The ones who make us laugh, who are joyous to be around. Im not saying fill your life with Mary Poppins’, some of the people who make me happy are filthy minded, raucous and quite dark! But they are interesting and make me feel good about myself.

3. Take responsibility for your own life

This is a biggy for me, the trait I hate the most in people is refusing to take responsibility for their own lives. People who have constant excuses for their bad behaviour, who think it is always someone or something else’s fault. People who say “its alright for you because…”

Own your life. Own your mistakes. Live and learn and move on. The world doesn’t owe you anything, you make your own path through this world. Everyone faces hardships throughout their life but you can choose to be a martyr to your tough times or own the shit out of them and move forward a stronger person.

4. Be yourself. Everyone else is taken

Be the best version of yourself that you can be. Be true to yourself and be proud of the person you are. It’s easy to compare ourselves to others, the fact is there will always be someone thinner, smarter, prettier – but honestly? Who cares? Whatever part of yourself you admire the most, be that more. The parts you dislike about yourself, be that less…

Be proud of your quirks and weirdness, stand tall and proud and applaud your inner awesomeness!

5. Create your own happiness

No one else can change your life and make you truly happy. Choose positivity over negativity, smile because you can. Choose to be happy. Be happy with who you are right now and allow your joy to shape your present and your future. Do the things that make you happy more often, spend time with those who bring out your smile and create your own happiness. If you are waiting for someone else to make you happy, you may be waiting a long time.

6. Find the silver lining

This is a toughie. When you are going through a really tough time it is easy to slip into feeling defeated and that life is just too hard. We go through things in life that we think will break us, illness, bereavement, job loss, money troubles, and it can feel like there is no way to get through these times. The truth is we are stronger than we think.

It is important to look for the silver lining even if that is only the tiniest sliver of hope. When I was recovering from my bowel surgery and was in pain, I was feeling humiliated by leaking bags and the inability to care for myself. During that time I struggled to see the silver lining, but the reality of it was that I was no longer sick. My Ulcerative Colitis was gone, ten years of illness, pain and medication were now in my past.

If there is no silver lining in your situation, for example the death of a loved one, then try to count your blessings and be grateful of the good things in your life.

When things are hard, and you feel down, take a few deep breaths and look for the silver lining – the small glimmers of hope. Remind yourself that you can and will grow stronger from these hard times. And remain conscious of your blessings and victories – all the things in your life that are right. Focus on what you have, not on what you haven’t.

7. Be kind

Be a kind person, one who is caring and thoughtful, who thinks of others and treats people with respect. Kindness breeds kindness. Its a simple one but so important, kindness sometimes is confused with being a doormat – this is bullshit. You can be a strong person who has a kind and loving heart.

8. Be open

Be open, share your thoughts and feelings with the people closest to you. If you are hurting then accept the hurt and allow yourself time to heal – let your loved ones in and be honest with them. A problem shared is a problem halved is a great saying, the act of speaking your troubles out loud can be of as much help as any advice you can receive. Becoming a more open person can lead to real happiness.

9. Let go of the past

Our pasts define who we are and we can learn lessons from the things we have gone through, but when your past is keeping you from moving forward it becomes a problem. We have all had tough experiences but if you are reliving the pain of this experience again and again and it is affecting your present then it is time to let go.

Letting go doesn’t mean forgetting what has happened or pretending it didn’t happen, it means letting go of the pain and resentment that is holding you back. This is easier in some situations than others, but be honest with yourself and if something from your past is affecting your present then it may be time to talk through those issues either with a trusted friend or family member or a trained therapist.

10. Take a chance

Last December my husband and I took a leap of faith, we sold our home and rented a 15th century mill to push our photography business forward. It was a risk, but a calculated risk. I knew that if there was a motto to live by (other than ‘If you can’t sing well, sing LOUD’) it was ‘I’d rather regret the things I did, than the things I didn’t do. We plotted and planned, did the sums a million times and then decided to take a chance. And it was the best thing we ever did, don’t get me wrong there have been some very tough times but throughout the year I knew we had made the right decision.

Life is not about getting a chance, it is about taking a chance. If there is something you have always dreamed of doing, then try to make it happen. If it works you will have achieved a goal, if it doesn’t you know you at least tried it and you WILL learn a lesson from it.

11. Be mindful

Live in the present, in the here and now. It is so easy to let busy lives, technology and procrastination take over our lives, but being mindful of the things around you can bring peace and happiness into your life. Take time to notice the things that are important in your life right now, experience life as it happens. Don’t dwell on the past or imagine how great things could be in the future. This moment is the only thing guaranteed to you in life, we never know what the future holds so enjoy today.

12. Concentrate on the things you can control, not the things you can’t

Worry and stress is a normal part of life but when your day is taken up with worrying about the things in life you cannot control it is a sign that things need to change. Worrying about things that are beyond your control is such a waste of your time and emotional energy.

Worry affects you, not the person or situation you are worrying about. If it is important to you and you can control the outcome and positively help a problem then great, if not then let it go. You have enough genuine problems to face in life without upsetting yourself with things beyond your control.

13. Face your problems and make a positive change

There’s no point in burying your head in the sand, if you have a problem you need to face it head on and make a positive change as no one is going to do it for you. The problem will not just disappear on their own without action from you, no problem is too big to overcome. It takes acceptance from you and then a plan, no matter how small the steps you need to do little and often and move it forward.

Some problems you will be able to overcome alone with a good old fashioned list and a bit of hard work. Others are bigger and need support from others. There is no shame in asking for help, whether it is the help of friends, family or a professional.

14. Appreciate the things you have

Perspective. There will always be someone better off than you and someone worse off than you. Learn to appreciate the things you have rather than worrying about the things you don’t. Im not saying we shouldn’t aspire to be greater than we are now, but just not to be so busy in thinking of the things you don’t have that you forget to appreciate all you do.

15. Love those around you

Appreciate and love those around you, bring joy to the people who mean the most by telling them how much they mean to you. Since my sister moved to Australia I end all our conversations with “love you!” I didn’t do this before she left but her moving half way around the world brought out something in me that makes me want her to know how much she means to me.

This isn’t about huge grand gestures, it is about personal, meaningful acts that let your friends and family know how awesome they are. A text message, sending a photo that you think they’ll find funny, a hug, a few words.

Love Sam xx

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Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous. Timm and I went to the Hallamshire to meet with Mr Brown, my consultant. He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?” I replied that I felt great. He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!

He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister. We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery. Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.

I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?

I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag. I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa. I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!

I had my first communal changing room experience with the bag. As most women know, the communal changing room is a fearful place. There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else. Well I was nervous and initially went into the loo to change. I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area. After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp. And I did it! I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else. I helped that I was with my good friend who always boosts my confidence.

Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward. My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!

My second option is to have pouch surgery. Pouch surgery is also known as ileo anal pouch or j pouch surgery. Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum. Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.

There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet. He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then. I have arranged another appointment in six months time and hope to have made the decision by then.

I really don’t know what to do for the best. Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me. I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now. Ill look into everything in the next few months and see what I think.

Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia! We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.

When I was in hospital after my surgery I happened upon the hashtag IBD Warrior and seeing and reading other people’s IBD journeys, their struggles and ultimately the way they overcome what is such a shit illness inspired me and gave me the strength to move forward and to blog about my own journey.

So when I had my stoma photo shoot, we also did quite a few other photos with different styles. The last few months have been tough but through it all I have tried to stay strong, keep fighting, be a kick ass woman and an IBD Warrior.

We all have an inner strength, sometimes that strength shows itself through having to fight for your life, sometimes its in a quiet confidence, at other times it is having to speak out for what is right or in being strong enough to just get through bad times one day at a time. Even when we feel weak and defeated, we have within us the ability to adapt, to change and to move forward. Sometimes it is easier to find than others. Sometimes its so hard to find that we have to speak to friends or family and borrow a little bit of their strength till we can remember where our own warrior is hiding.

The next time I feel frightened and like the world is against me Ill look at these shots and remind myself of how far I have come and that I am an IBD warrior. Hear me roar…

Last night I started with a stomach bug, I felt queasy and then the output from my stoma turned to water. My bag was filling extremely quickly, I was emptying once or twice an hour and I felt awful.

I had a google and thought I’d try some Imodium (loperamide) to deal with the very watery output from my Ileostomy. I went to bed after puking with a hot water bottle and feeling sorry for myself. I had stomach pain and felt awful. I was a little worried that it could be a blockage, but from dr google I realised that even if it were, the best things to do were drink hot drinks, massage my stomach and try different positions to sit and lay.

I woke this morning after a really restless night feeling terrible. Still awful diarrhoea, nausea and stomach pains. But worse than all that was my mood. I just felt so down, like this was a setback in my recovery. I don’t think I’m generally one to feel sorry for myself but today I’ve been such a Debbie Downer…

I hate feeling sick. I’d rather have pain that nausea, that queasy feeling is the thing that drops me to my knees. So today the nausea teamed with tiredness, a leaky bag, soreness and pain has made me a proper mardy arse!

I try to keep chipper through all this but this has knocked me, I’m feeling low and fed up. Tonight we were meant to be having a few friends over, a bonfire, fireworks, good food and sparklers! Instead we had to cancel and Timm had taken the kids to the local bonfire, so I’m sat at home listening to other people’s fireworks feeling pretty sorry for myself.

The plan is Imodium, plenty of fluids and rest. I’m hoping it will be over soon and I’ll be feeling better. Sometimes we need to go to bed with a hot ribena, a hot water bottle and have a little pity party.

And so I’ll do that, and then pick myself up, shake off the grumpiness and smile…

I just want to explain a little more about my reasons behind this lifestyle change. I laugh and joke about shedding the fat and getting skinny, but I have to admit my main reason is fear.

Im scared, man! After my surgery and during the first few weeks of my recovery I was shocked and so frightened by just how weak my body was. I *know* it’s normal to be wiped out ofter surgery and that was explained to me but the reality of it was extremely difficult. The total lack of control was the hardest, the inability to even walk to the toilet, the need for help in the shower and the extreme tiredness freaked me out. Im an independent woman and Ive always done everything for myself. I moved out of home at a young age, and then once married I spent 9 months of the year raising the kids alone as Timm’s job took him away from home so much.

Post op

So to suddenly have to entirely rely on other people was HARD. Timm stepped in and did so much, along with help from family and friends (for which Im so grateful) I didn’t need to raise a finger. The first weekend after I came out of hospital Timm had to work away for the weekend and so my mum and best friend Caroline came and looked after me, they cooked, cleaned, helped me shower, changed bedding and just cared for me.

The weeks of laying in bed were really difficult, as much as I knew it was necessary to allow my body to heal, meant that my muscles became even weaker. After the hardship of the ulcerative colitis, then the huge amounts of medication pushed into me and then the surgery itself, I have never felt so completely drained, weak and helpless. The steroids I had been taking for months had made me gain weight and made me feel like crap.

I know that whatever decision I take in the next year, whether I keep my ileostomy bag or have the take down pouch surgery, I will have to have at least one more surgery. The thought of this terrifies me, not so much the surgery itself (though that’s pretty scary too) but the recovery… The idea of being reduced back to a weak, out of control being is kind of heart breaking.

And so I have two options. I can spend the next year worrying, panicking and being upset at the thought or I can take control of the situation and do everything I can to ensure that going into that operating theatre I am as strong, healthy and fit as possible. I know that this won’t stop me needing to recover and that Ill still feel like shit after the op whatever I do, but if I can go in feeling strong, I have a better chance of an easier recovery.

This week I joined the gym, I have been swimming, been to the gym twice, once with a personal trainer, done an aqua fit class, a deep water fitness class and a Pilates session! My ileostomy bag held up for all of the activities and I have been careful and made sure Im not straining myself too much. All of this just 8 weeks after surgery!!

In my gym gear – can you see my bag?

This surgery saved my life, it has improved my quality of life vastly and meant I could come off the vast amount of medication I was taking before. In stopping the meds I already feel a million times better. I realised that I have been taking my body for granted for so long. Now Im missing my colon I need to use this time to start looking after myself.

And so that is what Im doing. I refuse to choose fear. I choose #gettingstrong